Survey: Experiences of LGBT Patients and Families in Hospice and Palliative Care

The lesbian, gay, bisexual, and transgender (LGBT) community has a long history of experiencing discrimination and stigma in many arenas, including health care and social services. Gary L. Stein, JD, MSW (SWHPN Vice Chair, Professor at Wurzweiler School of Social Work at Yeshiva University) and Cathy Berkman, PhD, MSW (SWHPN Board, Associate Professor at the Graduate School of Social Service at Fordham University) are conducting a study to learn about the experiences of LGBT persons and their family and friends with palliative care and hospice programs. The goal of this study is to the ways in which their care is discriminatory, disrespectful, or inappropriate based on their sexual minority status. Study findings will be used to develop and disseminate policy and practice remedies.

Your participation is voluntary. If you do participate, you have the option of remaining anonymous. If you choose to share your identity, your responses will be confidential. Study findings will be reported in the aggregate and it will not be possible to identify individual respondents or their institutions. We expect that the national sample will include several hundred hospice and palliative care respondents from social work, medicine, nursing, chaplaincy, administrators and elder law attorneys.

The questionnaire should take about 15 minutes to complete. The questions are about: staff education and training in providing care to LGBT patients; institutional policy about non-discriminatory LGBT care; provider knowledge about working with LGBT patients in palliative and end-of-life care; provider awareness of disparate care to LGBT patients and families, including care that is different, inappropriate, disrespectful, abusive, or neglectful because of sexual minority status; and disparate or disrespectful treatment of patient proxies, surrogates, family members, or friends. You may skip any questions that you don’t want to answer. 

The risk of participation is very minimal. You may experience minor discomfort when answering certain questions. You may skip any questions you prefer not to answer and you may exit the questionnaire website at any time. While there be no direct benefit to you, your participation will contribute to understanding the experiences of LGBT patients and families in hospice and palliative care, and to developing recommendations for improved practice, policy, staff training, and research involving the LGBT community. There is no compensation for participation.

If you choose to participate in this study, you may access the online survey at:

https://goo.gl/A8pYNV

If you have any questions about your rights as a participant in a study, you may contact the Institutional Review Board at Yeshiva University, at 718-430-2776 or at [email protected]. You may also contact the researchers directly at [email protected] or [email protected]@edu

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